Embracing Reality

I admit it.
I really blew it, big time. Two weeks ago, after my last "glowing" report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I moved from the reality of my health, to a fantasy world of my own making, which convinced me I was almost healed. It was not only stupid, but because I knew I was only half-way through the treatment protocol, it was unrealistic.

I've had this problem of moving into unrealistic expectations all my life, even before I got sick.

I remember in the 5th grade, setting up my little home-built "Estes" rocket in the driveway of our Southern California home, convinced that I was launching something straight out of NASA. Based on the big color advertisement in Popular Science magazine, I had convinced myself that my "Explorer" rocket would fly straight up over my house, reach apogee, take a picture with its little onboard camera, fire off a parachute, and come floating down into my hands on a perfect trajectory. I was an astronaut!

"How cool!" I thought.

Of course it didn't turn out to be quite that cool.

After struggling for an eternity on aching knees with the little battery powered igniter that just refused to work, I finally had to do the unthinkable. I asked my Grandmother Flo to come over and help me. Now, you have to know, no 9-year rocketeer ever wants to have to ask his Grandmother Flo to help him do anything, but since she was the only person in our family who smoked, and had fire, I recruited her to my pyrotechnic team.

"Do you have any experience with rocketry, grandma?" I asked semi-seriously.

"No," she said, while taking a big drag on her 30th Viceroy cigarette of the day, "but that won't matter a whit. I'm game!" And even with her depression-era manner of speaking, I knew she was.

"Just take your lighter and touch that fuse there, grand..."
Before I could get the rest of "ma" out of my mouth, I heard a "whoosh" and saw a the Estes rocket scream into the skies.

Well, in all honesty, to say I actually "saw" my rocket launch would be stretching it - I basically "heard" the thing ignite, and figured by the smoke and the surprised look on my grandma's face that it was airborne. So I looked up expecting to see it soaring, just like the color advertising and pictures on the box illustrated.

Unfortunately, by the time I got my head and eyes looking upward, my rocket was already floating down to earth, barely visible in the distance, about 1000 feet away, dropping like a dead bird right over Foothill Blvd. So I took off running.

By the time I arrived at the busy "touchdown zone" the cars on Foothill Blvd. had already completely destroyed my Estes Rocket. Had it not been for that tiny patch of cloth stuck on an oil patch in the road, (which I assumed was the "parachute"), I wouldn't have found it.

When traffic cleared I ran into the road, picked up what was left of the debris, and dejectedly walked home. My grandma was there to greet me, grinning broadly with that Viceroy cigarette hanging out of her stained teeth.

"You did it!" she shouted, while lighting up her 31st cigarette of the day. "That was great!"

"Grandma," I said sadly, "it was nothing like I imagined. I expected it to fly for a long time, and parachute back to me, like the picture on the box. Not just hear a 'whoosh' and have the whole thing over in 10 seconds!"

"Oh, that's the problem with expectations," she said, taking another drag on that Viceroy. "It's a fantasy. But the expectations get us to a place where reality takes over...and reality is always better than fantasy," she said.

"Why is that?" I asked her, sincerely, no longer focused on her stained teeth, but genuinely interested in this Waltonesque wisdom.

"Because, up until a few minutes ago," she said through smoke plumes, "you were just one of thousands of boys who only dreamed about shooting their very own rocket. But now, I bet you are the only boy in your school who can say they actually did shoot their very own rocket! And 25 years from now, you'll still remember this story, and the fact that it only lasted 10 seconds won't matter a whit."

Grandma Flo was right about everything. I was the only boy who could tell that story, and I milked it every chance I got...at least through Junior High. She was right about remembering it too. It's been more than 25 years and here I am telling the tale in detail as if it was yesterday.

I guess I still haven't learned how to control my great expectations though.

On the heals of the great report from my doctor and how good I was feeling after my 6-month evaluation, I had moved into fantasy world. I started imagining myself doing things again. I began to get into magazines that had bicycling and hiking themes, remarking to my wife that we should plan a trip to the Rockies.

After being enthralled by a TV commercial about a jazz club opening in town, I foolishly remarked that maybe I would "take her dancing this weekend." Even though I was only half-way through my treatment, I started thinking and acting like I was already finished, and completely well. I was an astronaut again, flying rockets in a dream world of my own making.

Then after about 4 days of this bliss, I woke up sicker than I had felt in a very long time. My glutes were killing me. My sciatic nerve was twitching. My back was so sore I couldn't bend over and touch my knees. My head felt swollen. I had brain-fog bigtime.

I had fantasized myself right into a huge flare, and it was my own fault.

I had forgotten that the "healing curve" on Ampligen, or any therapy for that matter, is more like the stock market - up a couple days, down the third. The ups and downs vary day by day, but over months, the curve or slope is slightly up.

As our systems adapt to the healing process and homeostatis, we take three steps forward, and then two back. Even today, in my 7th month of treatment, I still have good days and bad days. But the bad days are getting fewer, the good days are increasing, and my healing slope is going up.

But I forgot all of that 2 weeks ago, by not embracing the reality, and letting my dreams get ahead of wisdom.

Doctors and researchers report that most patients who battle Myalgic Encephalomyelitis are former A-type personalities, super-achievers who, before getting sick, dreamed great things, believed amazing things, and created awesome things. We are personality types who are wired to set unrealistic expectations, distant goals, and then astound everyone by trying to actually reach them.

Kim Phillips says that in 20 years working with CFS patients in neurophysiology therapy she has never met one who wasn't brilliant. Maybe you don't feel brilliant right now, but you are. Our minds and hearts are more than game...It's just that our bodies aren't cooperating right now.

I confess, I didn't feel brilliant on the couch this past weekend, barely able to stand up. I actually felt like an idiot. But my wife helped me snap out of it.

As I slowly limped into the kitchen, hearing a jazz favorite on the radio, holding back tears I said to her, "I really wanted to take you dancing this weekend, sweetheart."

"So dance with me now," she said, holding out her arms.

And that is exactly what we did. For about 10 glorious seconds, which was just about all the energy I could muster, I danced with my wife in our kitchen. No, it wasn't in a fancy jazz club. No the music wasn't live. And it wasn't anything like I had imagined in my fantasy.

But it was reality. And it was mine.

And just like my Grandma said, I have no doubt that 25 years from now I'll not only remember this dance, but I'll be telling this story in great detail - how I enjoyed embracing reality, by embracing my wife, and danced with her in our kitchen. And the fact that it lasted only 10 seconds won't matter a whit.

Thanks so much friends for you kind and heartfelt comments. The little bit I know about most of you through prior correspondence and interaction tells me that "A-type Personalities" might be an unofficial "marker" of our pathology, if not our demographic. It's funny, I never appreciated my Grandma Flo until way later in life. She had only an 8th grade education, but taught herself stock trading after my grandfather died at an early age, and supported herself more than comfortably on that. A year before she passed away, at age 89, I heard her laughing at some jokes told from the stage by a German band that visited her old folks home. I said, "Grandma what are you laughing at, you don't speak German!" She said, "of course I do- mammy and pappy were from Germany you know, and they spoke it around the house. I just never figured I needed to use it. Or tell you!"

I enjoyed your heartfelt story, Kelvin, which tugged at my heartstrings. A few minutes of reality vs. great big dreams can suffice, which is something many of us need to hear from time to time. Thank you.

Kelvin, you are brilliant! Even better, you are also wise. Grandma Flo taught you well. Your wife seems to be very wise, also. I'm so glad you're sharing this with us. Many of us are dreaming of one day being able to follow in your path. Thank you for paving the way for us!

I loved your story, I sent it to a friend I want your gradmother to come to dinner, what a gal! I crashed myself after 8 years so know the feeling, sill in shock.. I was doing everthing as we always do. .LOL We must not be as smart as we seem to be! The best of luck to you and the rest of your treatment. You will get there be patient! A very hard thing for us to do.

I loved that. Perhaps because I can relate to it so much. I love to dance. I was just dancing before typing this. In my apartment. Last year, when I had a boyfriend, I would always ask him to dance with me. In the 8 months we dated, we only made it out once to dance. But we danced almost every date we had. He was from Texas and taught me how to 2 step. Those were some really happy moments even though I was quite ill.

The fact that you are doing better speaks volumes. AND, you are still one of the best writers on here.

THANK YOU! And, I am total type A and it is what it is! WE ARE WHO WE ARE!!

Thanks for the cautionary tale, Kelvin. I felt better today than I have for months, and all day I've been fantasizing about all the stuff I'm going to do in the next couple weeks---ahem. I'm now going to lay low and be cautious.

This is a tough disease! You can get a whole lot better and still not be all that well. At least you were feeling well enough in your flabby, out of condition body to think about dancing - that shows real promise. It says to me you were feeling pretty good in your skin - that's immense.

I just don't know why more people aren't interested in studying this disorder - its so fascinating really.